I haven’t posted in forever! That’s because I’ve had things to do each week and weekend. Typically, my social life is one family event a month, one or two medical visits, and the rest of my energy goes to existing, hanging out at home with Jake, and playing with Emma when she comes. Up until a few weeks ago, I hadn’t even seen my best friend who I live 15 minutes from in 8 months because I never had the energy for visitors or going out to lunch.

This past 5 weeks or so, I’ve been very busy. My sister is getting married in Mexico in less than a month (yay!), and I am a Maid of Honor who does no Maid of Honor duties. I am so thankful for her best friend Jaci, my second big sister, who has fulfilled my duties without any of the glory! When I even mention how awesome she is, she rolls her eyes like I am ridiculous for thinking she needs thanked. We’ve had two celebrations for my sister. Three family members had birthdays and get togethers, one of them being Jake. I tried to organize a birthday party for him to the best of my ability. My inability to remember or concentrate made that a bit challenging, but it turned out nice! I’ve also been having all sorts of appointments and testing, several requiring 1-2 hours of travel time each way. I will write more about that in the future when I have a better idea of what is/isn’t going on. If you see me in person and are curious, feel free to ask — it’s not a secret, I just am waiting to write it out on here. Oh yeah, I also moved to my parents house for 2 weeks to try and rest up then back to my house again. That is a story for another post. Despite having so much help from other people to get me through it all, I used several months worth of my “spoons” in just 5 weeks. I became more and more wore out, and by the end of last week, I was requiring my full Adderall dosage to function (usually I take 1/4 of my dosage).

The past week I have been very forgetful — enough that Jake notices, enough where I forgot who Matt Damon is, enough that I actually can barely remember my sister’s first wedding shower. I am also almost constantly nauseous, experiencing pre-syncope way more than usual, having more fevers, more pain, and just overall, I am not comfortable. I am 100% certain if I didn’t have my medications, supplements, and biofeedback training, I would have ended up in the hospital again by now! Luckily, my illnesses are managed better now than they used to be and I have all sorts of tricks in my bag. My fluids order is different than it used to be, so getting them now takes 2-3 hours for ONE liter This makes me inclined to wait until I am next to deaths door before going to get them because it’d actually be quicker to just go to the ER than get my standing order performed. Grrr…. I am hoping to fix that situation at an appointment in May.

Some people who are chronically ill hate it when people say things like, “Well, I’d never guess you are sick — you look so pretty!” I don’t hate it. I think the reason some people who are ill hate it is because they feel the person giving the compliment is minimizing their illness. I don’t feel that way and I don’t feel like anyone close to me in my life believes I exaggerate my illness. If they do, they hide it well and they’re wrong anyway, so it doesn’t matter to me. Therefore, I’m thankful I don’t look as bad as I feel and I am sometimes able to pull off not seeming as sick as I am (some of you cannot be fooled). I mean, if I’m going to be sick, I feel lucky that at least I can still look nice. I’ve always been known as a “smiler” and someone who can laugh even during the worst of times. Being sick hasn’t changed that and I don’t think just because I am uncomfortable means I have to look like it all of the time. I still have more to smile about than I have to complain about, so I am going to continue smiling. I suppose the last three sentences sum up how I chose the name of my blog!

Often, conversations are the area where how cruddy I feel shows irregardless of how I look. By the time I get to a family event, (especially if I’ve done my hair beforehand), I am not the best conversationalist and that cannot be faked, but that’s alright I guess. Often, when I am thinking back to conversations I had, I realize my response didn’t really answer the person’s question, didn’t make sense, or sounded uninterested. I will think of a question I would have asked if I’d been thinking properly. It’s very annoying because I love catching up with everyone! Just know I’m not aloof, my brain is just deprived of oxygen. I think I do my best communicating via text, messaging, or e-mail because I can lay flat while I do it, I have time to think, and I can come back to it when my brain is cooperating.

Well, that’s all for now. I am hoping to write more posts this week. I get to rest this week and I will get to rest in May. Until then, I hope my body keeps on working as incredibly hard as it has been!

Oh, and to finish the sentence in the title of my post:

“When people say I look pretty… I say thank you and feel thankful I don’t look how I feel.”

I agree it so important and not something to take for granted. It is nice to hear you have support too. I’ve come across people who would be grateful for ONE person in their family to be supportive. I’m so lucky. Even my extended family who don’t see me regularly understand!

Wow, you have been busy! How I look, especially on exceptionally rough days, is always a conundrum. On the one hand, people will understand I’m I’ll if I look I’ll. On the other hand, I don’t focus on my illness as much if I look normal. I still do my hair and put on makeup when I can.

I know what you mean. I remember going into work to get my things after having to resign and what a big deal it was deciding I would not cover up the giant black circles under my eyes or do anything to reduce the bags. I was too tired to do even one swipe of mascara. It felt very empowering to choose to let people see visible signs of my illness rather than using my energy to put on makeup.

Overall, I prefer to not have strangers in the store ask me, “Honey, are you alright?” so I see my ability to use a little makeup to wake up my face when needed as a blessing! For day to day, I usually just do a swipe of mascara and a bit of blush. Sometimes I still look sick, but I don’t look bad enough for strangers to ask me if I’m okay!

Such a great way to respond to the dreaded “you look good” comments! I usually just don’t respond at all because I know that some people don’t mean any harm and others are just oblivious to empathy. But that is such a graceful way to handle it. Kudos Jackie to yet another great idea 🙂

Hope you are able to get some real rest before the wedding so you can fully enjoy it!

Thanks! I never minded the comments except for when they came from doctors, but I also always had my family believing I was sick and not doubting me, so I think that’s why I never came to think of “you look so nice” as anything but a compliment.

I used to get a bit offended by men honking back when I was healthy, but I am sad to say, I was excited the other day to get honked at by a bunch of 16 year old boys! LOL. I was like “Jake, I’m dolled up enough today to get hit on by high school students!” He didn’t find it as heartwarming as me….

Most of the time I get those comments, they sadly come from my family. They don’t take the time to understand what I’m going through, but I do have an amazing boyfriend and a couple friends that do. I hold onto those friendships as tight as possible ❤

Thank you so much for your thoughtful words. I see my daughter just sit quietly in social situations, unable to muster up the energy to engage. Sadly, people think she has nothing to offer. Yet they will often comment on how good she looks. I appreciate your ability to see the positive in this situation.

I know many people feel frustrated when told they look good when they are ill. Like you said, I just choose to see it as a positive since I think usually, the person is trying to offer a compliment, not insinuate I’m not sick. It can be hard to know what to say to someone who has suddenly become disabled.

I’m sorry people think she has nothing to offer. Do people tell her/you that or does it feel like they think that from the situation?

I like your perspective! I’m happy that you have a family that can give you that compliment without it having an alternative meaning. From all your posts it sounds like you pretty much have the most supportive family ever! And I’m glad you figured things out with your living arrangements. You tried, it didn’t work and you’re back to your happy place. Now you can say you gave it a shot and won’t have regrets 🙂

I have my 1 liter of saline run in daily over 4 hours. I have a small pump and a backpack for it (ha! Like i run around anywhere. FUNNY!) When I first got sick, at ERs they would run 2L in over an hour or two and I got worse. Eventually we figured out that running it in fast made me sooo sent it I’ve to electrolyte changes. Now I do 1L a day with an extra liter bag per week for “rescue” infusion.

I’m happy they figured that our for you! I don’t use a port and just require fluids as needed, so I go to the outpatient area of the hospital to get my fluids. I actually do well with 2 liters over about 2-2.5 hours. The problem is my doctor wants my blood drawn and analyzed before each infusion, so I end up at the hospital for HOURS!

Hi Kid. I’ve been kinda tripping over my own words to respond to your post, but I think you have such a unique inner beauty, people just naturally respond to you. Most people are uncomfortable giving (or recieving) compliments, so they fall back on the cliche’ you look pretty’…. You really care about the people around you, and that comes through in your smile, and in the way you talk to people. It s hard to think of such a caring person as being so sick that they can barely get through the day. So when people meet you, it’s a natural response to say ‘you look pretty’ ……. You’re beautiful on the inside, and that will always shine through on the outside!
Love you!!! Let us know if we can do anything for ya’s!!!

Aw, thanks Uncle Rick! That was so sweet and I know you guys would do anything for me — you always have 🙂

Fortunately, I don’t think I’ll ever see the day where I’m offended when someone tells me I look pretty!

Funny sort of related story: When I was about 10, Staci told me she liked my hair, and I said I liked hers too. She lectured me about how I need to learn to just say thank you to compliments and accept them. Well, since she was my idol, I quickly adopted her way and have kept it ever since! 🙂

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